Headache Better, Belly Worse

More Tests More Waiting

I realized today it has been about 44 days since the last "Bad Headache Day" posting. I've had some flare ups since then, especially when I was in hospital with pancreatitis, but the pain is much less than it was. I still have daily head pain, but now it is around a two on my pain scale most days. Compared to this time last year the pain was staying at about an eight to nine on my pain scale all day and all night. I was contemplating having to quit work because I was so non functional from the pain. Now The Headache has receded to a tolerable level I am optimistically hoping it is whipped. Yeah Occipital Stimulator!

Was able to do a phone interview for the occipital stimulator study intead of flying to Cleveland. Lilly the study coordinator went to bat for me - she's such a nice lady! I have two more visits after this one - the next visit will be in the spring, I will get the headache diary back and keep it for another month. Hopefully by then the ever present nagging headache may have disappeared. I realize that my range of disability from the headache has improved sooooo much since I got my buzzer installed. Now if I can just get The Belly to cooperate.

I have been home sick almost this entire week. I feel like I am letting my bosses and my work mates down because this stinky painful pancreas is flaring up. Dr. Gnome's office called and said I may have to have another ERCP, which I am NOT looking forward to. I am severly allergic to the dye they use with the fluoroscope during these procedures. The only time I had one done, I came out of it with The Headache that never goes away!

Dr. Gnome ordered a bunch of blood tests, which I had done at the lab they faxed the orders to. Several of the tests will need to be sent out to Mayo's (they must be weird ones) so I don't know when the results will come in. The lab techs thought some might be in by Monday. My arms are still bruised up by the blood tests and IV's from being in the hospital and the blood tests I had about a week ago, so the poor lab techs had a hard time finding a vein. I try to be very patient about the blood testing process as my veins seem to know they are being stuck and either dissapear or dry up when a needle gets near. I can't figure out how my body does this. It is extremely frustrating!

The blood tests seemed to be looking for an inflammatory or autoimmune or hereditary cause for the chronic pancreatitis. Dr. Gnome's PA had told me if I have autoimmune pancreatitis they won't need to do an ERCP - that they can treat me with prednisone. I don't like the side effects of prednisone, but would be happy to avoid an ERCP.

I want to get whatever I need done over with, so I can get back to work like a real person and contribute. I have been soooo sick feeling this week and taking pain medication and anti nausea medication that my mind isn't working very well. We are a small company, and right now they need all hands on board. I'm at the point just like last year with The Headache I am almost ready to throw in the towel and quit trying to work. I keep hoping that something will fix The Belly the same way something fixed The Headache.

Well, tomorrow is another day and next week may bring answers to The Belly dilemma or it may just create more questions. I will try and behave myself, and eat very little this weekend so I will be at my best come Monday.

ERCP Gnomes

Yet Another Specialist

Before The Headache, I had problems with pancreatitis. The problems started in 2006, got worse in 2007 and then I had a pancreatic and billiary sphincterotomy for papillary stenosis (Sphinter of Oddi Dysfunction Type I) done by ERCP in November 2007. I came out of that procedure with The Headache, but the pancreatitis seemed to resolve itself.

I was hospitalized this month for acute pancreatitis, and now am told I need to see the ERCP specialist again. This is my third bad flare up of pancreatitis in less than a year, and my second hospitalization, so I guess something needs to be done, but I'm not looking forward to another procedure. I was hoping the pancreas would calm down after I quit taking the indomethacin and the toradol, but no such luck. I'm not sure what can be done at this point. When I had the sphincterotomy I was told that 100% of these would need to be redone at some point. Just wondering if I have gotten to that point....

The ERCP specialist (nickname Dr. Gnome) is very well-respected and skilled. From the demerol drugged memories I have of him from 2007 he looked like a little yard gnome - apple cheeked, happy, with a cute little curl on his forhead. I was sitting way up in the air on a flouroscope table so he is also foreshortened in my memory, making him yard gnomishly small. He had a surgical hat on, not a big red pointy hat, which was a disapointment. I sure hope I didn't tell him how cute he was, but knowing me and demerol I'll bet I did! My brother told me that Dr. Gnome was not short at all, but I just can't get that image of him standing there in his fluoroscope apron with his tidy surgical garb on looking like he was about three feet tall, out of my head. He was soooooo cute!

Dr. Gnome's office is supposed to call my gastroenterologist's office to get this scheduled. The last time I went to see Dr. Gnome I thought it was just a consultation but nope, the next day I had the ERCP and pancreatic manometry and the sphincterotomy done. I wasn't prepared for that, but this time I am going to ask more questions about the appointment.

I'm not as down this week as last, have just a little more energy and not quite as exhausted. Wasn't able to work yesterday, but worked today, and hope to work a full day tomorrow and the rest of the week. I'm just sick and tired of being sick and tired.

The Headache is behaving itself so far this week, with every day having some painful jabbing spikes of pain, but overall pain levels are way way way down. Wishing I could say the same for The Belly.